[Mark Cox]

I’m a 65 year old male experiencing more brain fog each year as I’m going into my fourth year of full blown gMG. Without my infusion, I have all the gMG symptoms and have also been changing infusion brands. Starting with IVIG, then Vyvgart, currently on ULTOMIRIS and trying to get Blue Cross to approve Vyvgart Hytrulo for the past 3 months with no avail yet…?

I have experienced more brain fog starting in the second year of being diagnosed and more in the last nine months that seems to be bringing on moods swings that I’ve never experienced before and part of the reason I’m changing my infusion brand again among other side effects… It’s come to the point of challenging my older age or feeling the fear of Alzheimer’s coming on primarily because of the recent mood swings combined with the brain fog but after being checked out by my neurologist, he says it’s just part gMG and the different infusion brands shouldn’t have much or anything to do with my brain fog.

Since, I’ve been trying to manage it on my own by taking notes on diet, sleep, work/life events etc. and finding stress is one of the main culprits for me along with lack of proper rest as I’m still working in a high stress job with out of town traveling twice a month… When traveling through the airports, motels, client meetings and don’t eat right or get proper sleep in motel beds, I can feel my body and mind draining quickly and triggering on additional brain fog making my traveling and client visits even more challenging…

The lack of sleep is definitely a large contributor to my brain fog despite the stress at work…

Like others, I’m learning that eating healthier is helpful, light exercise, plenty of rest including naps are very helpful for mind clarity… Coffee seems to help but caffeine sodas are short term fixes for energy and brain fog. Candy, bakery, Ice cream seem to pull me down which also brings on brain fog… When my body and mind feels down, brain fog seems to show up more often…

I’ve tried OTC vitamins and meds for brain fog but they are very expensive and not sure if they worked or not as I feel I’m getting better results with Plenty of rest, healthy dieting, light exercise and avoiding the stress fires at work and home… But like most. There are embarrassing days that I can’t remember my co-worker or grand kids names and other days of momentarily short bursts of brilliance that can’t explain…?

At the end of the day I’m really glad you brought up the Topic of “Brain Fog” as I think it’s highly overlooked and an under diagnosed symptom of Myasthenia Gravis and should be considered as one of the many gMG Symptoms and side affects so it can be addressed on the medical front…

[Mark Cox]

Chris, as first stated in my original post, I was put on IVIG first and it worked the best for me by far for six months but gave me severe migraine headaches that we could not control. Then I went to Vyvgart and it worked great 40 days of a 50 day cycle but it ran out in the last 10 days with MG symptoms starting to reoccur, mostly eyes, swallowing and stumbling around some times falling… I changed to ULTOMIRIS 9 months ago… That was quite a regiment just getting set up for it to prevent meningitis etc. and much more expensive than Vyvgart….

I have not had a good experience with ULTOMIRIS from the beginning. Please keep in mind my neurologist has several patients on it and really like it but most importantly our bodies are all different and do not always react the same. ULTOMIRIS lasted 60 days for me no problem as it was recommended for my work travel but the side effects for me were tough feeling like my mg got much worse especially in respiratory, wheezing now, body weakness mostly in the legs along with mood swings from rage to depression that I never experienced before and getting very little sleep feeling like a coffee buzz… But again, that’s just me and my body’s story just turning 65 years old having MG for 4 years now and still believe the second Covid shot triggered my mg as I began having all the full blown mg symptoms with 3-days later… but that’s only my theory for my self as it could just be coincidence but I do know there’s a lot more people with MG than there was four years ago before Covid..? I am going back to Vyvgart Hytrulo next week as it will make my work travel much easier to plan whereas I can pack it with me during travel.. I’ll keep the forum updated on my progress for anyone thinking of changing… I hope the IVIG works well for you and your body without the migraines or other and suggest drinking lots of of fluids and use a large flush of insulin to help keep the headaches down… Other than the side effects from IVIG, I honestly felt very normal for having full blown mg… Best of luck my friend…

[Mark Cox]

I’m ozempic as well with no side effects at this time. Lost 35 lbs in 4 months. Weight loss is a game changer as to how I move and feel much better. I am still on Vycart infusions for my MG.

Hope that helps..

[Mark Cox]

I think in short, everyone’s bodies and symptoms are different and react differently to their individual MG along with Vyvgart and all the other MG treatment-medications. Near as I can tell, I have most of the full blown side effects from my MG and have had very good luck with Vyvgart other than the 50 day cycles prescribed to me and I’m not sure about where my sores / rashes come from via MG, Vyvgart or all the other MG related medications that I’m on… From my dermatologist to my neurologist, they are only guessing what my rashes are from and giving me cortisone type creams to keep them under control… They are not bad by any means just superficial on my knee, ankle and head and just another “wack a mole” maintenance to add on to my MG care…

All I know is that I did not have sores/rashes before MG/Vyvgart and my neurologist won’t prescribe less than a 50 day Vyvgart cycle based off the recent FDA guideline’s on potentially causing sores and rashes in less than 50 day cycles along with the fact I’m already dealing with some of these conditions. I’m also on Blue Cross for two more years that are also denying me less than 50 day cycles due to additional annual cost and potential side effects not identified in the denial letter. Hopefully this will change in two years when I qualify for Medicare…

More importantly for me and the main reason for considering another MG medication is that my neurologist is seeing better results in his other patients from Ultra Solaris and the cycles are 70 – 90 days apart and that would address the reoccurring symptoms gaps I’m experiencing in the 50 day Vyvgart cycles and would also free me up substantially for my job travels and quality of life. If the rashes go away by switching them, we would know what’s been causing them.?

But I do want to make it clear that I have had a great experience with Vyvgart resolving 80- 90% of my symptoms for a decent quality of life…! And would go on to say that if it lasted the full 50 day cycles that I’m on or if I could get it approved for lesser 35 – 40 days cycles it would be near perfect for me…

My other reasons for considering anther medication related to this article is that in a 50 day cycle my MG side effects start coming back at 35–40 days and It just doesn’t last long enough to safely and competently perform my job in regards to driving, traveling and public speaking responsibilities.

If the other MG medications do not work out, I can always come back to Vyvgart and will gladly share with the forum after a few months of experimenting but I’m still convinced that our bodies are all different even though we share the same MG disease and in my opinion there is not a one size fits all MG medication or dosage… Don’t be afraid to experiment within your doctors boundaries to find what is best for for your individual body and symptoms… I’m not a doctor by any means, just sharing my personal opinions based off my personal experiences….

Best of luck to all…

I’m On Jul 10, 2024, at 4:28 PM, Bionews, Inc. <[email protected]> wrote:

[Mark Cox]

63 years old. Been on Vyvgart for 2 1/2 years. I started out at the recommended 60 days cycles but started having reoccurring symptom’s at 40 days. Doctor moved it to 50 days between cycles. Still have symptom’s at 40 days. Insurance and FDA wont allow me less time between cycles due to the possibility of causing sores.

I love Vyvgart while it works but cant afford 10 days down time in between cycles due to my job and traveling. Currently seeking ultra solaris as another option…Just my two cents.

[Mark Cox]

After being hit hard with my first symptoms of MG only a couple days after my second Moderna shot, I will always struggle not to believe that the shot had something to do with triggering my MG in the first place…. Guess only in time will we ever understand the effects of Covid and the Covid vaccines that came along with it. I was never diagnosed with Covid but lost my sense of smell two years ago and still don’t have it back… I’ll always wonder why Covid took the strongest and youngest of my three close cousins when they all contracted Covid at the same time…Like many others with MG, I too want to live the best life under our circumstances and have a lot to live for but I also lack confidence in my immune system since contracting MG and still practice the same Covid related precautions such as a much better hygiene washing my hands regularly, watching what I touch and breathe and wearing mask in crowded places such as airports, hospitals and ballgames… It’s unfortunate how quickly society has forgotten Covid. If there was a positive for COVID, we all quickly identified our hygiene short falls and improved dramatically or at least some of us did, But on the other hand how quickly society forgets these things when they don’t have an illness such as ours that makes folks like myself much more defensive in protecting ourselves when it comes to hygiene…Im also noticing at the stores now that rarely they fill the sterile wipe containers to wipe off the shopping carts etc…. In short, not much has changed for me since Covid other than being more aware of my MG and practicing all the hygiene precautions I learned during Covid.

Regards

[Mark Cox]

I’m 64 year old male that started out the same way with the same symptoms from IVIG infusions. Headaches were absolutely the worst that could not be controlled even with prescription meds. I was moved to VYVGART after the second round of IVIG infusion la and have not experienced the same symptoms since. I will say despite the IVIG symptoms, I felt better physically and mentally on IVIG but the side effects you describe were too much to take… Crazy thing, MG patients are like oil and water when I comes to anesthesia. So due to my recent back surgery 2- months ago, I was given an IVIG infusion the day before the surgery and the day after… Tgey felt it would be stronger than my VYVGART??? I’m not sure what caused all my MG symptoms to return via the anesthesia, surgery or the IVIG infusions but the majority of my MG symptoms were triggered for about three weeks after the surgery mostly blurred vision, slurred speech and swallowing. I actually went into the emergency room three weeks after surgery and had some food pushed out of my esophagus. Food had been try to lodge in my esophagus for the first three weeks after surgery. The crazy part is that I did not have any of the original side effects from the IVIG infusions such as the headaches, body aches and chills… Go figure as I think we’re all wired differently and react to our MG infusions differently… Hope that helps a little…

Mark

[Mark Cox]

Just following up on my last comments. I too have had the back pains combined neuropathy pains all leading to epidural’s, cortisone shots and over the counter pain relievers and finally degenerative back surgery just 3 weeks ago. With that said I must strongly note one comment I’ve expressed to all my Doctors throughout these procedures….

Myasthenia Gravis without a doubt exacerbates any and all current and pre-existing pains. “Or at least in my experience”

I’m 63 years old and have had MG a little over two years now and my pre-existing pains such as my back and neuropathy pains became much more noticeable and painful in these past two years.

I finally had Back surgery just three weeks ago and it has taken a lot of pain and numbness out of my neuropathy related issues already… meaning there are other pain related ripples and variables besides just blaming on it on MG but I strongly believe that MG itself has been a main contributor to my increased pains for the last two years…

Another concern for MG patients I would like to point out is Back surgery or any surgeries for that matter….. Anesthesia and MG do not get along well and we need to make sure our Anesthesiologist, neurologist and surgeons know that we have MG. I was lucky in my case and my neurologist, surgeon and Anesthesiologist teamed up before my back surgery. Even with them taking all the precautions of weight loss to proper BMI, getting cardio, cholesterol and blood pressure in line on.top of administering less anesthesia and a IVIG infusion the day before surgery and two more days after surgery, I still have had a rough time pulling through this surgery. It’s only been 3-weeks but I have my full blown MG back with all the double vision, swallowing, muscle weakness etc. I was in great shape with none of these symptoms before the surgery… Just two nights ago, I had an emergency surgery to remove an obstruction from my esophagus after having severe swallowing issues for the past two weeks after surgery. Best guess from my neurologist is full blown MG symptoms combined with strong pain meds for my back was weakening my esophagus muscles from doing its job properly and not pushing food through. I’m now on a liquid diet until my MG systems level out..Today I passed out easily 3 times while removing stitches…?

I had a similar back surgery 5 years ago from the same doctor and same hospital and didn’t experienced near the pain and other issues I’m experiencing from this one. Note, I wouldn’t change anything, just saying your surgeries with MG may be different than any of those you’ve had in the past and you should explore and prepare for all procedures with all your doctors…

Sorry I got of track a little as this last part should be used for another topic for another time but feel MG patients must be more informed of risk related to surgery, pain medications and anesthesia…

Back to the original topic, I really believe from my own experience that the current and pre-existing pains us MG patients experience are moderately to highly exacerbated from MG itself…

Hope this information helps someone and only my two cents…

Mark

[Mark Cox]

I’m 63 and had MG for 2 1/2 years now. First Mederna shot went very well, 2nd Maderna shot I didn’t feel well after. Within a week my eyes started drooping and hard to chew my food and lost all my strength during pheasant hunting trip and had to leave early. When I arrived back home 2-days later my eyes went to double vision when lifting a heavy object in my garage. Like every body else I had no clue what was going on starting with the eye doctor for double vision etc. After reading about my symptoms on the internet I diagnosed myself to about 4-5 disease possibilities.

I showed them to my primary doctor whom referred me to my now neurologist. 3 months later and a series of blood and MRI test I was diagnosed with full blown MG.

To cut to the chase it was probably coincidental of the 2nd Covid shot timing and having MG symptoms begin in the same week but there’s a place in the back of my mind that still feels they are related so in short I have no intentions of getting any further Covid booster related shots. I have never been diagnosed with Covid but lost my sense of smell about 18 months ago and still don’t have it back. I take elderberry vitamins daily and haven’t been sick for over a year. That’s petty good as my job requires much travel through airports, motels etc. My neurologist tells me they have seen a lot more neurological related patients show up in their office since Covid but has no opinion if MG and Covid could be related or not.

Please understand that my Covid shot experience is of my opinion only and just sharing my experience with the forum.

On an unrelated topic, I had a shingles shot last year that really threw me for a loop, was extremely sick and lost 20 lbs in a week plus most importantly I’ve learned that Anastasia is potentially dangerous on MG patients during surgery or other procedures. I’m having back surgery in a week and for a cautionary step to prevent the possibility of an MG crises during surgery, they will be giving me an IVIG infusion the day before and the day after surgery…

Hopefully in time and by sharing our experiences, we’ll all be much more informed about MG..Hope this helps..

[Mark Cox]

I use J.R. Watkins Pain Relieving Liniment Spray with Menthol and Camphor, Voltaren and Salonpas patches work best for my back pains and other MG related pains. All over the counter or Amazon.. All 3 will give 3-4 hours of relief. Hope that helps..

[Mark Cox]

I’m 63 years old and have had very similar back issues as described in about everyone’s reply. I’ve been through all the cortisone epidurals, ablations etc. with no avail. Nothing is broken just a little arthritis and degenerative concerns.. I’ve had MG a little over 2 years and if I’ve noticed anything about my pre-existing back pains and neuropathy is that MG has magnified or exacerbated both of them substantially plus the additional body pains especially during colds spells. I can’t stand long either and stay in the car while my wife shops etc. I too have blurry vision and have changed eye glass prescriptions 7 times this year chasing it downwards in which no one has been able to explain other than blaming it on MG. I’m on Vyvgart and plenty of oral MG pills to cope with MG..

I guess similar to Forest Gumps comment…MG is also like a box of chocolates, ya never know what you’re going to get… In short there are plenty of unexplainables with MG. Keep fighting for yourself and your family and hopefully they’ll come up with better meds, explanations and solutions for MG in the interim…

[Mark Cox]

I’m a 63 year old male always seemed to enjoy a great memory, I’m entering my 2nd year since being diagnosed with MG and definitely experiencing memory loss/brain fog as more time goes by. Not sure if it’s related to my MG or the medications associated in treating MG. No family related dementia history to lean back on…. My memory loss seems to come and go. It Can be great for a day or two and sometimes a week or two and then challenging for a week or two. I’m in the middle of my 4 week infusion cycle while I write this and find it much more noticeable during my infusion cycles. It makes it very challenging and concerning to continue employment with the high expectations of my job responsibilities. Is anyone else with MG experiencing similar symptoms while coping through MG and if so, does it seem to be more related to the MG illness or the MG medications…? Or possibly from the combination of both..?

Thanks

[Mark Cox]

63 years old on Vyvgart and a hand full of MG related pills and continue struggling with blurred vision and respiratory short of breath issues. Had MG for 2+ years now… Take oxygen as needed and on 7th pair of eye glass prescription this year. Eyes we’re both excellent before MG and respiratory was normal..

[Mark Cox]

Yes I have fallen several times since I was diagnosed with MG two years ago, even was sent to the hospital after knocking myself out during a fall hitting my head on some cement stair steps I was coming down.

I’m 63 and was very active in pro motorcycling events where balance was key to the sport and took pride in my sense of balance but since MG I have fell over on motorcycles and bicycles while stationary in place. I can no longer close my eyes while taking a shower washing the soap away from my eyes without holding on to a safety bar or something stationary or I will fall. I have a hard time walking down rocky or rutted roads in addition to maneuvering myself up and down stairs while trying to maintain my balance without falling…

In short, I feel I have lost a majority of my equilibrium since MG. Hope that helps.

Mark

[Mark Cox]

Having been diagnosed with MG for over two years now at the age of 63… Respiratory and fatigue don’t seem to respond to Vyvgart like I would hope. I am taking vitamins to support the Fatigue but respiratory has worsened over the last two years. I have changed eye glass prescriptions 7 times this year as it continues to rapidly fail in the right eye and some in the left eye. Been to several optometrist and all relate it to possible MG related symptoms as they checked me for everything else. Lastly, I must say that my Vyvgart works great for everything else as I have all the MG symptoms but it does begin to run down at 45 days in my 50 day cycle and the swallowing, eye flickering and fatigue start setting back in around 45 days. My neurologist says several others are experiencing the same cycle issues but at the high expense of Vyvgart the insurance companies are pushing back on more frequent infusion cycles…

Hope that helps…

[Mark Cox]

I’ve had MG of two years now with all the symptoms unless I’m on my Vyvgart infusions. I too have severe muscle spasms of my hands, fingers and leg muscle cramps . I have been taking fairly large doses of magnesium for several years and have not experienced any noticeable adverse symptoms since I was diagnosed with MG. Weather/heat and elevations/Height seems to be my most common nemesis to my MG… Still a lot of unknowns and magnesium may catch up with me long term. I’ve changed eye glass prescriptions 7 times this year but an unrelated MG topic for another time.. Hope that helps..

[Mark Cox]

I’m 62 years old and on 240 mg Pyridostigmine combined with 200 mg of azthroziaprine along with Vyvgart infusions. Seems like high doses compared to the other replies. But in short I have had no side effects for over a year now. But…I have changed eye glass prescriptions 4 times in less than a year getting progressively worse in both eyes for distance but don’t need my reading glasses after 15 years of use. My Neurologist and optometrist are still trying to figure that one out. If it’s an allergic reactions related to any meds above, I’ll pass it on in a later review and appreciate reading everyone else’s responses.

[Mark Cox]

I’m 62 and Like most my MG started out with double vision a year ago and I used the pixel glasses for a short period until the Vyvgart kicked in to clear my double vision.

My concern now is that my vision has changed 4 times in the last 9 months mostly In the right eye mostly which includes new prescription eye glasses each time and getting expensive.

Crazy enough, I’m typing this without readers during this current change which is a first in a long time without readers but concerned what comes next…I’ve been seeing two optometrist and both are baffled thinking it has to be related to the MG in some way as there are little or no signs of other causes.
Don’t know if there are any medical procedures for this other than new eye glass prescriptions each time but if it turns into more of a surgical matter I will share it later…

[Mark Cox]

I’m 62 and was diagnosed 1 year ago with full blown MG symptoms that all exposed themselves over a two week period..

After 3 months of trying to find a a doctor to fully diagnose my MG, they started me out first on an IVIG of <span class=”s1″>Gamunex that work very well for me compared to Vyvgart. I Felt much stronger and less anxious from Gamunex but we couldn’t control the severe migraine side effects from the </span><span class=”s1″>Gamunex and it consisted of 3- daily infusions at the end of every 30 days.

Due to my job travels and working around 30 day infusions, I became more attracted to Vyvgart infusions on every 60 day intervals. Turns out most my MG symptoms was returning in 40-45 days so we moved it to every 50 days and all my neurologist will allow for now. I’ve also notice that I pick up colds and flu’s easier in that same 40 – 50 day period and learning to stay away from the public and travels during that time.

</span>

I have experienced both respiratory and infections symptoms that may be related to Vyvgart and have stayed in the hospital overnight twice in the past  9 months due to low oxygen levels when staying at my cabin at 7000’ elevation in Utah and I was put on home oxygen as needed which is mostly at night around any high elevations such as my cabin… My respiratory concerns also initiated a move out of our home in Utah County at 5500 ft elevation to less than 1000 ‘ foot elevation in Nevada. I don’t require any oxygen at this level unless I’m fighting a cold etc.

I also had a knee operation over a year ago still struggling to get the superficial wounds on top to heal, other wounds are noticeably taking much longer to heal. I had a foot rash infection Around my ankle about 6 months ago that I’ve never had before and cleared it up quickly with a prescription and over the counter medication.

To be Fair, I cannot attribute any of this to Vyvgart itself because my doctor wasn’t sure what is causing these issues either and as he mentioned a lot of these things could be directly related to just MG itself not to mention I’m no spring chicken at 62 years old.

All that I can really share is that I haven’t had any of these type of issues since the last nine months and Vyvgart is the only change during this period other than my MG itself.

On a positive note, Vyvgart has been a game changer for me as well and I’d much rather be on Vyvgart and deal with a few side effects versus dealing with all the challenges of MG without any treatments and would highly recommend Vyvgart to anyone from my experience. Just sharing my two cents if it  lends value to your question and anyone else’s experiences…
<p class=”p1″>Best of luck with your Vyvgart treatments…!</p>

[Mark Cox]

I’m 62 years old and I’ve only had MG a year now with all major symptoms via double vision, chewing, respiratory, speech and strength loss etc. I was in relatively good physical shape a year ago but my physical and some of my mental speech and concentration health have been affected. I Am a VP product line manager in the oilfield that requires 24/7 on call duty with a lot of traveling to inter-company districts and oil field rig locations. Without my Vyvgart Treatments, none of this would be possible. It’s still hard to dress in a hard hat, coveralls and steel toe boots to even walk across an oilfield location let alone walking up on the 30 foot rig floors. Even getting through the airports are difficult and use a cane or request a ride on their carts. I attended many operational meetings internationally and externally with clients and find my ability to concentrate or follow conversations can sometimes be difficult. The hardest part is sometimes finding the words or the embarrassment in mispronouncing common financial or industry words and terminology.. I find myself writing more emails to avoid verbal conversations due to this. Like most with a rare disease, I hope and pray that I can retain my employment at least until the age of retirement. I conduct a lot of blowout training with new people to the industry and on the drilling rigs and that feel I have a lot of experience and knowledge to give back to the industry. Keeping my wages and insurance are very important but I also seem to have stronger sense of still feeling useful and productive while managing through my MG. During my Vyvgart cycles, I have to manage my travels around my Wei infusions and actually have been infused in different states such as North Dakota that would allow. Some states do not allow this such as Nevada without a prescription from a Nevada Physician which can be very difficult as I have experienced.
In Short, MG has been a Game Changer to my employment and usually don’t share that I do have a rears disease such as MG probably because I’m too proud to accept preferential treatment.. This is just my experience in a short time and hope can relate to others experiencing similar employment type challenges with MG.

[Mark Cox]

Thanks for sharing, It’s taken me close to a year to follow my neurologist recommendation of ULTOMIRIS just for the same reasons that you mention such as require blood lab tests and preventive vaccinations, some before and during treatment that caused most of my hesitation…. I wish I had heard of Vyvgart Hytrulo before changing to ULTOMIRIS to at least give it a try… Thanks again for sharing as I’ll keep the forum updated on my ULTOMIRIS journey in the months to come…

[Mark Cox]

Thanks Keith, like you I’ve enjoyed Vyvgart, only wish it lasted a bit longer to get me through the infusion cycle.

Not only did my insurance deny shorter infusion cycles but my neurologist told me the FDA wouldn’t approve Vyvgart for less than 50 day cycles in concern to potential skin rashes…

Hopefully they’ll find a way to improve Vyvgarts strength for the full 50-60 day cycles.

Thanks for sharing

[Mark Cox]

Excellent information, thanks for sharing…

[Mark Cox]

Thank you, I have not tried Tonic water without the alcohol for muscle cramps, I think I’ve tried about everything else such as Bananas, pickle juice, dark chocolate and others, the only thing that seems to work best is magnesium mixed with potassium. My doses have gotten higher as the years go by and cramps spread. I’ll give the Tonic water a shot. If it works for my cramps and I feel any improvements with my MG, I’ll certainly share the results with this forum.

kind Regards,

Mark